This article has reposted with permission from the American Society on Aging. An abridged version of this article first appeared in their March/April 2020 ASA Today publication.
During one of my visits to Northern Michigan from Georgia this past winter, I recorded all the tasks that go into just one of my sister’s days as a primary caregiver…
‘Hi Mom’, Susie says after answering the FaceTime call on her iPad laying next to her in the bed. Susie must not have heard mom cry “Susie” from her bed in the family room. Susie is thankful Mom is iPad savvy and knows to FaceTime her if Susie is out of earshot. Susie fell asleep watching The Crown again. Good thing she is repeating the series since she can barely remember seeing much of the episode.
Susie looks at the clock. It’s only 5:30 am. Tom, our brother with a developmental disability who voluntarily stays up near mom’s in-home hospital bed during the night, must have just gone to bed. While Tom certainly brings his own unique caregiving worries, Susie is grateful to have her younger brother in Michigan with her and mom full-time. She is also grateful Tom is nocturnal and can answer the questions mom has during the night, refill her water, or pick up anything accidentally dropped on the floor.
‘Mom, it’s only 5:30 am. Remember we said our day starts at 7 am? Are you okay for another hour so I can get a bit more sleep?’
After Susie repeats this a few more times (mom doesn’t sleep with her hearing aids in), mom says she didn’t realize it was still so early and can wait a bit longer for her coffee. Susie is relieved mom has agreed to give her a bit more time. The day just seems to get off to a better start when Susie can savor one cup of coffee while reading the daily devotion from her Jesus Calling book and writing in her journal.
To increase the chances of the uninterrupted coffee morning time, Susie relocates the already prepped coffee pot along with a mug to her bathroom each night and sets it on a timer so it’s ready to greet the day.
Occasionally, she manages to squeeze in a quick morning workout while listening to a podcast. Right now, in the dead of winter, the vintage exercise bike from the garage is in the master bathroom. It’s the warmest spot with just enough space and the location with the best chance of an uninterrupted workout.
The Abridged Background Story
Susie (59) has been the primary caregiver for our mom, Carole (83) for over three and a half years. Susie is also the acting guardian for our brother, Tom (56), who has a developmental and behavioral disability that closely resembles Asperger’s. For the past two years, the three of them have lived at what was once our parents summer home in beautiful and remote Hubbard Lake, Michigan.
Before moving to the lake from her Philadelphia home of over 15 years, Susie worked tirelessly to get Hubbard Lake ready to be a year around caregiving residence. While she was selling her home and packing, she was making calls at the lake to get a generator installed, ramps and handrails positioned, and the heating and air optimized.
For a little over a year, mom has been 100% bedridden due to the progression of her COPD and mobility issues. Susie remembers the day when they had to call the 911 non-emergency assist because mom couldn’t stand up from her bedside commode to return to her bed. Mom’s inability to ambulate didn’t happen overnight. It was a sad and gradual progression over the years from a walker, to a wheelchair to just being able to transfer a few feet. Mom has been receiving home hospice care since late summer of 2018. In addition to COPD and mobility issues, mom also has diabetes, depression, edema, sleep apnea, heart disease, and hearing loss.
While not diagnosed with any form of dementia, since mom has been bedridden, she frequently has what we call ‘adventures’ where she confidently believes she has spoken with dead relatives, taken a train trip, walked around the lake, or has had her life threatened on an elevator. Sometimes the family goes along with the stories and sometimes we must gently assure her she is safe in her bed and well cared for by family who loves her.
The Morning Routine
At 7:00, Susie greets mom with a ‘Good morning, mom’ and a kiss. While putting mom’s hearing aids in and picking up the items which have scattered around the bed during the night, Susie asks how mom slept. Mom divulges her latest ‘adventure’. On that night, mom met another person named Susie and went out to lunch with a few people. One woman was so rude and took a taste of mom’s soup without asking first. Usually, the stories aren’t happy ones and are difficult to listen to.
Susie puts disposable gloves on and listens to ‘the adventure’ while having mom roll to side to side to check if she needs a bed change. Susie continues to listen to mom’s detailed story while emptying mom’s catheter bag. Then, she redirects mom by opening the curtains to view the sunrise coming up over the lake and asking if she’d like a cup of coffee. The answer to coffee is always yes because you can already smell it.
While fetching coffee, Susie refills mom’s water with lots of ice (just the way she likes it). She serves the coffee and places a hand towel on mom’s chest for a bib. Susie is like a machine and automatically goes through the motions to check mom’s blood sugar level, gather her morning pills from the pill organizer, and prepare the breathing treatment.
During their coffee time together, Susie has been reading aloud from the published Waddodles of Hollow Lake series that mom wrote. They are currently in book 4 of 5 of this young adult chapter book series that helps address adult issues such as the death of a spouse/father using woodland lakeside animals.
She asks mom which of her regular breakfasts she would like. Lately, it’s been an English muffin with peanut butter and honey and a grapefruit.
After getting her breakfast order, Susie asks Alexa to play some music – mom’s ‘go-to’ is anything by the Righteous Brothers. Sometimes instead of music, Susie opens the local TV app on mom’s iPad for mom to watch live TV, Fox News, or Penn State football games. Then, Susie sets the timer for 10 minutes on Mom’s iPad where mom can watch it and turns on the nebulizer for the breathing treatment (they used to argue about how long the breathing mask was on and the timer has alleviated this struggle they used to have three times a day).
While mom is enjoying her breakfast in her bed, Susie makes homemade oatmeal for herself with walnuts and unsweetened coconut. Susie’s doctor suggested eating oatmeal to help lower her cholesterol numbers.
Since it’s the weekend, the home hospice care professionals aren’t coming. Susie appreciates their weekday visits when they come to bathe mom, change the sheets, and check which supplies need refill. The hospice staff, including the chaplain and the nurse, have become Susie’s friends. Over the months they’ve all gotten to know about each other – their holiday plans, their families, and their future dreams.
Before Susie gets herself ready for the day, she assists mom with washing her face, brushing her teeth, changing her house-dress, and squirting a few drops in each eye to alleviate mom’s dry eye.
As Susie folds the load of laundry in the dryer, she mentally thinks about the day. She remembers Karen, the Eucharistic Minister from the local Catholic Church, will be by around six pm tonight to pray and offer communion to mom. She recalls a pot roast in the fridge in dire need of getting in the crock-pot before it spoils. She’s still determined to carve out 30 minutes for the stationary bike.
Susie makes her mental list of what chores need to be done around the house – the must haves (shovel the snow from the front walk before it refreezes and pay the bills) and the nice to haves (clean out the front closet to make a bit more room for her art supplies). She’s glad she got the one gift order oil painting done and she is pleased with how it turned out – it’s a sweet face of a golden doodle named Dax.
Susie’s happy place is painting at the lake. She knows someday she’ll have more time to paint and work on marketing her art business. She also longs for more time to drop everything and be with her four grown children. The oldest two are working and completely on their own (one in Philadelphia and one in Washington D.C.) and her twin boys just have one more year at Penn State University.
The Mid-Day Routine
Susie scurries around the house getting as much done before it’s time to check mom’s blood sugar again and prepare lunch. Thankfully, mom’s eyesight is still good enough to read romance novels on her iPad. Susie makes a BLT sandwich and cuts up some orange slices for lunch.
After mom’s afternoon catnap, Susie plays a few games of Uno with her. Mom struggles with some of the colors but still enjoys playing. Susie tried writing the names of the colors on the Uno cards but mom is sometimes still unsure of what card to play. Often for Susie, playing cards, reading books, or coloring with Mom remind her of spending time with her kids when they were young.
The Evening Routine
The winter days are short. After dinner, the evenings become more of a challenge with mom. And, by the end of the day, Susie’s patience bank has been depleted. Mom’s brain is probably also tired. After sunset, Mom usually either gets confused and doesn’t know where she is or insists she can get out of bed and make it back to her bedroom. Susie agrees with mom as much as she can but when it comes to mom’s safety, Susie is firm. When mom is too agitated to calm down, Susie willy apply a cream version of Lorazapam hospice provided to mom’s wrist.
The evening routine is all business. Success is getting everyone to bed with as little frustration as possible. Susie once more checks the bedding, empties the catheter, injects the insulin, removes the hearing aids, plugs in the iPad and situates all of mom’s essential items on her bedside table where she can reach them throughout the night.
“Ok mom,” Susie says, “you have everything you need. I’m going to bed. Tom will be home soon.”
“I love you,” Susie says as she lands a kiss on mom’s cheek.
Susie thinks to herself ‘where did all the hours go?’. She recalls her mental morning list again. Thankfully, she did get the walkway shoveled and paid at least the one critical bill that was due. Guess the pot roast can wait one more day. The bigger projects like cleaning the closet out are so tough to do in a caregiving day. She makes a mental note to ask one of her sisters to help with this on their next visit.
As Susie dims some of the lights, she decides she’ll make a cup of Sleepytime tea for herself and maybe watch an episode of The Crown.
Some of the links on this page are affiliate links. When you click on a product and choose to purchase it, I receive a small thank you from Amazon or another partner which helps reimburse me for my blogging, podcast, & site expenses. There is no additional cost to you.
